Prescription: District Taco | PTSD and Cancer

 

logo_home-4f80f071f7676deaac829abe23bec48fSlowly but surely, I’m finding friends, groups, communities where women feel free to share their experiences with breast cancer. While every single woman is different, it’s remarkable how we are all united by our experiences. And while I know we all hate that someone else feels the same way we do, it’s so comforting to not be the only one feeling that way. It is so reassuring to realize that what you’re feeling is normal.

Last week, I took part in a discussion* on twitter about PTSD and cancer. Yes, that’s post traumatic stress disorder, but in survivors of cancer instead of war or natural disaster. I read up on PTSD before the discussion, and found that it is characterized by an extreme reaction to a trigger that reminds the patient of the trauma. I hadn’t ever thought about PTSD in terms of cancer. Apparently, many people will avoid driving the same route they had to go to chemo. PTSD interferes with some peoples’ ability to go to check ups with their oncologists because of the extreme reaction just to walking into the office.  Even a simple sound or smell can trigger extreme anxiety. While I certainly have more anxiety about little aches and pains than I did pre-cancer, I quickly realized that I am fortunate that I do not have full-on panic attacks as I drive past Virginia Hospital Center.  For those suffering from true PTSD in relation to their breast cancer diagnosis and treatment, the doctor moderating the discussion suggested the women slowly ease themselves back into the situation that causes their anxiety.  I guess forcing new experiences on top of the old trauma will eventually help neutralize the strong anxiety.

As I was listening to the discussion, they mentioned that many patients experience this avoidance without such an extreme reaction.  And then it hit me.  Maybe this is the reason I tend to avoid District Taco. When Sally and I discovered it, just after the taco truck became a full-fledged restaurant, I would find any excuse to eat there.  Since it’s close to me and not Sally, she and I would eat there almost any time she was in the neighborhood. Which included after many of my chemo and doctor appointments.  By the time I finished chemo, I really wasn’t all that interested in eating there anymore.  I know all about food aversions associated with being sick, but since chemo never made me sick, I figured that had nothing to do with it.  I’ve been back and didn’t have a panic attack, the food was as yummy as ever, but my enthusiasm is clearly dampened. But as it turns out, it’s apparently pretty normal that my brain shies away from things that remind it of chemo. And to retrain my brain, a real, bona fide doctor said that I need to eat more District Taco. (Kind of, but I’m going to run with it.) That’s a prescription that’s easy to take.

*The #bcsm chat occurs every Monday night at 9pm on twitter.

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Writing for an Audience

why i writeBetter to write for yourself and have no public, than to write for the public and have no self.*

-Cyril Connolly

Anytime one writes something, I think it is so important to consider the audience. This blog started out a year and a half ago mostly as a practical matter.  With so many wonderful, caring friends and family, I wanted a quick and easy way to be able to update anyone who was interested after my initial breast cancer diagnosis.  It started out simply, details of the diagnosis, important dates, and treatment details.  I knew that people would be glad to read the updates, but really, the writing was as much for me as it was for them.  The morning I started chemo, I think I had at least 40 or 50 emails, facebook messages, and texts.  There is no way that I could have responded to each of those. It would have taken hours.  Yet with a quick blog post or picture to Facebook, I could let everyone know how much I appreciated the messages, and more importantly, I could let them know I was fine.

Days and months passed, treatments and surgeries came to an end, and the number of people who had passed my blog along to someone they knew going through breast cancer grew.  With fewer updates to give, I continued to write.  Sometimes my posts were more informative– things I’d learned, things I’d wish I’d known sooner.  I began to emerge from the emotional shutdown that accompanied my diagnosis, and my writing became more emotional, too.  As a reader, I always appreciate honest emotion with a little humor thrown in.  And so I began to craft my words with a different audience in mind.  I’m thrilled that I have friends and family who continue to read, but now I think about what someone going through breast cancer would want to read, the reassurances that she needs to hear.

I never sat down to “journal” my cancer as coping mechanism.  Of course, many people will say that journaling is so important, but I wouldn’t have been one of those people.  Yet, there are so many things that I discovered about myself as I struggled to compose a blog post.  Putting my feelings into words meant that I had to understand what I was feeling, and often it only became clear as I re-wrote a post for the third or fourth time.  It turns out, while I thought I was writing for family, friends, or the unknown woman googling to make sense of her new breast cancer diagnosis, I was really writing for myself.  And so I will continue to write.  If you want to read, I’m honored.  And if not, that’s ok, too. Because I need to write more than I need an audience.

 *I stumbled across this quote when reading the post of Dr. Don Dizon, an oncologist who believes in the power of medical narratives and social media.

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Missing Cancer | Doctor Appointments

The view from the exam table at my plastic surgeon's office

The very familiar view from the exam table at my plastic surgeon’s office

I was talking with a few women last week, all of us had been through breast cancer treatment or were in the midst of it.  We talked about lots of things, but eventually got to talking about our doctor appointments. During treatment, I might have one week with no appointments, but the next week, there was at least one appointment and one trip to chemo. Even after chemo was over, I had countless pre-surgical and post-surgical appointments.  I sat in this exam room once every week or two for months going through the expansion process that led up to my final reconstructive surgery.  Even after that final surgery, there are still lots of follow ups.

After spending so much time with kind, compassionate doctors, it’s like leaving friends behind once you’re released to visit only once every six months. Every woman who had finished her treatment could remember the strange feeling of saying goodbye to a favorite doctor and the staff. Being free of all those appointments and interventions should be cause for celebration! But as much as we all loved seeing the familiar faces, there is a reassurance when you see a doctor every week or two.  Even if they’re not doing any scans, even if you are seeing a surgeon who is primarily concerned with aesthetics.  There is reassurance to knowing that you are in the presence of a trained physician, surely if he says you’re ok, then you’re ok.  Even if it’s just a chat, surely the oncologist can see if there is a problem, right?

I truly enjoy chatting with my physicians, we usually talk far more about non-medical things. I feel certain that, had I met them under other circumstances, we would have been friends. But there is the subconscious, the unverbalized reason that it’s hard to wait six months before heading back to put on that awful “open in the front” paper gown. There something so reassuring about hearing a professional tell you everything is ok.  So now I’m hoping that it’s reassuring enough to last for six months, until my next appointment.  I definitely didn’t recognize it at the time, but I really do miss all those appointments.

This post is part of a series of what I’ll miss from my time as a cancer patient.  I know cancer is a serious thing, not everyone tolerates treatment well, and not everyone recovers.  I don’t mean to offend by making light of a serious subject.  These posts are just a glimpse of my efforts to make the best of my situation—to find the silver linings wherever I can.

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Don’t Try To Make Me Cry

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I don’t know about you, but I’m so over the commercials for the Avon Walk. I have nothing against Avon, I think a lab I was in had some funding from them at some point. And I even did the Avon Walk back when it was the Avon 3Day, in 2002. The shirt they gave me as I finished my third day and sixtieth mile is way too big, faded, and bleach stained. Yet I still wear it.

So I have nothing against Avon or their walk. But the commercials are killing me.  I’m sure they’ve funded some good research and helped some women get mammograms. But the notion (that’s all over their commercials) that my signing up today will save the life of my just diagnosed friend bugs me more every time I hear it.  The notion that if I don’t walk, I am depriving her of the ability to see her daughter get married. Really, if she’s already diagnosed, then a mammogram or next year’s research isn’t going to make a difference for her.

I think what irritates me is the overly emotional plea. I feel like they want to make me cry, they want to manipulate me into signing up for the walk. Emotional manipulation like that just weakens the credibility of an argument.  That makes me so sad, because I think there is validity to the walk. If you want to convince me, tell me that the research will help my daughter, future generations. Tell me how many women will get a mammogram the very next year just because I walked.  But please, Avon, don’t try to make me cry.

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Grant Reviews and a Hotel Stay

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My kids are great. Sweet, kind, and actually, pretty independent most of the time.  But a night, all by myself, with this view? Not much could be sweeter to a stay at home mom. I’m sure it would get old, I’d miss my family desperately if it happened all the time. But once in a blue moon, a night at a hotel by myself is like a vacation. Plus, it gave me a chance to dress up and wear these fabulous shoes!

This was a working vacation, though. When I was in graduate school, I had the opportunity to apply for a predoctoral training grant from the Department of Defense Breast Cancer Research Program (BCRP).  Each year, Congress appropriates funds specifically for breast cancer research, and the Department of Defense administrates the funding program.  (I was honored to receive the training grant in 2001.)

One of the unique aspects of the DOD funding mechanism is the inclusion of breast cancer advocates on all of the peer review panels.  I recently had the opportunity to participate in this program, with other breast cancer advocates and alongside highly respected scientists, to evaluate proposals submitted to the BCRP.  To prepare for my mini-vacation, I had to read and review several proposals. Then, once at the hotel/conference center, we discussed the proposals and eventually voted on them. Though few are trained scientists, all the advocates are full voting members of the panel. I was worried about how I might be received, as I can imagine many scientists don’t love the idea that their hard work is evaluated by someone who understands little of what they say. And yet, the scientists on our panel were so respectful of me and the other advocates, explaining things we didn’t understand and giving our words as much value as those of their colleagues.

I was so relieved to follow along with most of the science presented, and even saw a few nods from fellow scientists at some of my comments. Probably the biggest ego boost was when my scores were a little different than the first scientist on one of my assigned proposals and the final scientist reviewer said she agreed with my scores and wanted to alter hers to match mine! To be clear, though, as consumer reviewers (I don’t get why they called us that, we weren’t buying anything, but whatever), we were only required to score the impact of the proposal, not the science.  We were there to provide another perspective, many times a bigger perspective, that could represent not only our own personal experience, but the experiences of the breast cancer community as a whole.

The preparation was a lot of work, to be sure. But I found immersing myself in the science not only interesting but fulfilling. I enjoyed meeting and getting to know several of the scientists on my panel, and I made a good friend in one of the advocates from my panel.  Throw in a quiet hotel room, too, and I’m sold.  I’m sure I’ll be back.

You can get more information on the Breast Cancer Research Program, including how to serve as a consumer reviewer, at the DOD Congressionally Directed Medical Research Programs Website: cdmrp.army.mil.

 

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Celebrating One Year

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I tend to be the kind of person who works best with incremental bench marks, little goals with little rewards.  Whether it’s running (a new piece of gear for following the first part of a training plan) or housework (can’t check email until completing an action on my to-do list), the breaks in the mundane certainly help the time pass more quickly.

And so this week, I celebrate one year cancer free.  Last year on March 13, I headed into the hospital to have any remaining cancer removed from my breast, and I came home with the assurance that there was no cancer lingering in my body.

As with other areas in my life, this one year mark is a small goal counting down to a bigger, more substantial goal.  For most women following breast cancer treatment, the five year mark is a big deal.  Statistically, if you make it to five years with no evidence of disease, you are considered cured.  Triple negative breast cancer is much nastier and more aggressive, and in general, that’s not good.  But since it’s so nasty, it tends to rear its ugly head much more quickly. So this would be one of the few times when those of us in the triple negative club can count ourselves lucky– three years is our critical time point. If it’s coming back, it’s not waiting five years. So we only have to make it three years before taking a big, deep breath– I’m a third of the way there.

Since the first half of my “first year” was consumed with surgical appointments, I didn’t spend much time tracking my progress towards the first benchmark. But the second half? That has been harder. They spend so much time telling you what to expect with chemo, how to deal with post-surgery pain and restrictions. I even went to a “survivorship” appointment, where one would expect to learn what it  means to be a breast cancer survivor.  Still, I was unprepared for how much more little aches and pains worry me, how much more I wonder if this will be my last time doing something. During treatment, I think I’d shut down my emotions so that I didn’t even consider my mortality for a second.  With the return of emotions, I’m finding that I’m dealing with things that I apparently put on the back burner a year and a half ago.

And yet, with the first benchmark in the path towards the word “cure,” I’m hopeful that I’ve dealt with the bulk of those stored up emotions, ready to emerge and find a way to be productive with all that I’ve learned and gone through.  In the coming weeks, I hope to share some more about the projects I’ve been working on lately.  A grant review session, another feature in a publication, and an online video segment… I’m not quite there yet, but I feel like after a year, I’m starting to find a way to take what can only be described as bitter irony– a PhD breast cancer researcher diagnosed with breast cancer– to make a difference to other women walking the same path.

 

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What to Wear to an MRI

What to Wear | MRI

Just a few days after that dreaded call from my surgeon telling me that the cyst aspirate which was supposed to be nothing was, in fact, cancer, I went to the hospital for my very first MRI. Besides the whole cancer thing, I’m very healthy, and I’ve never had a broken bone, so I’d never even contemplated the idea of having and MRI.  I talked to the people from nuclear medicine and was sure to follow their instructions and get there plenty early, doctor’s order in hand.  My surgeon asked if I wanted her to write a script for Xanax, but since I’d never had a problem with claustrophobia, I assured her I’d be fine.

I showed up wearing my favorite white jeans and a pair of high heeled gladiator sandals.  Sally and I were going out to lunch after that, and I wanted to feel good about how I looked.  (My hair looked great, too.  I can remember so many people telling me how beautiful my hair looked. I know they were being nice.  But salt in the wound, ok, people?)

Anyway, I should have thought it through a little better.  An MRI is basically a giant magnet that they stick you into, so of course, you can’t wear jeans with all the metal rivets and zipper inside.  I put on a hospital gown and walked barefoot to the exam room.  It gets pretty cold in the exam room, so they wrapped me up like a burrito in warm flannel sheets. My husband (and probably my college roommates!) will tell you that I like it to be cold when I sleep, I’m a shorts and a tee year round kind of girl. The idea of flannel sheets that have been warmed and then tucked in all around me just makes me shudder. Ick. I don’t know why I didn’t say something from the start.  For a breast MRI, you lay on your stomach with your arms Superman style ahead of you, so the kind nurse wrapped them up, too. And it’s super loud, so they stick in ear plugs.  Then they back you into the tiny tube.  At which point I had my first major freak out.  I’m pretty sure I was hyperventilating, and this usually unflappable gal had to make the technician extract her from the tube post haste. After a few tears and many apologies, I finally convinced them that I could not go back in the tube all wrapped up like that.  So we took off nearly all the blankets (maybe every last one), I took a deep breath, said a quick but fervent prayer, and back in I went.  I did relatively well, though by the end of the nearly 40 minute exam, I started to get pretty cold, and was scared to death that my shivering was going to mess up the part when they add contrast, which is “the most critical part” for which you must lay absolutely still.  The thought of doing it all again the next day was enough to keep the shivering pretty much at bay, and I managed to get through it.

The next time I went in for an MRI, I was much more prepared.  See, if you wear stretchy pants with no metal parts and socks, you get to leave them on! If I had to go back tomorrow, (which I don’t, for the record) I’d be wearing my fave yoga pants*, a shirt that reminds me I’m strong, and some happy socks.  (I don’t own these socks, but if I have to go back in that tube, I think I deserve to be wearing a pair of socks whose brand is Happy Socks.) Dressed all casual and comfy like that, Dior Addict Lip Glow is the way to go– more of a lip balm that looks like my natural lip color, only better.

Oh, and I forgot to include one thing in the picture.  The Xanax.  If a doctor ever offers you Xanax, you go ahead and take it.  My second MRI was so much better, and I’m sure the pants and the socks helped.  But also, the Xanax.

*These pants are on sale right now, and I’m fighting the urge to stock up.  Seriously, they’re worth every penny.

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New Tunes | Runnin’ Like a Mother With Spotify

mother runners

Sally and me with Sarah and Dimity, authors of Run Like a Mother, May 2012

I have to admit that I’ve heard of Spotify, but hadn’t gotten around to finding out anything about it.  I’ve had Pandora for ages, and have been happy enough with it to bother with anything new. Big. Mistake.

I adore the ladies at Run Like A Mother. (If you’re a mother runner, or have even considered taking up running, you must read their book. It will get you out the door, I promise!) Sarah works tirelessly to create special running playlists, and I’ve taken lots of her suggestions to add to my little iPod shuffle. Last week, their blog featured the 50 Best Running Songs, and provided a link to the playlist on Spotify. I headed there right away and got my own account immediately. I tried it out on my run today, and was delighted.  I could head straight to the mother runners’ playlist and shuffle through their picks.  It is definitely a diverse playlist, but it was so much fun!  Those six miles literally flew by as I anticipated the next song. A few songs were brand new to me, one started off so depressing, but seriously, hang with it.  I was literally laughing out loud as I ran down the trail.  I’m not super speedy, so six miles takes a while, and I didn’t hear one single ad, even on the free version. (I’m looking at you, Pandora.) It didn’t drain my phone, but I’m guessing you’d have to watch out for data usage if you don’t have an unlimited plan. But since I do, I’m afraid my little shuffle might not get much action anymore. I think I’ll tuck my phone into my SPIbelt (also a must have in my book– it doesn’t bounce around at all!) and head out with Spotify.

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Buy One, Give One | Love Your Melon Hats

love your melon

 

Even before breast cancer was a part of my everyday life, I was uncomfortable with the “Pinkwashing” phenomenon– marketing all kinds of products in pink, promising that “a portion” of the sales will “benefit breast cancer.” And I’ve never even been tempted to buy a pair of Toms shoes, despite their philanthropic philosophy, mostly because I don’t love the shoes. (Their moccasin-style boots are starting to turn me, though…) But when I saw a feature on Love Your Melon on the Today Show this morning, I was instantly intrigued.

Two college students started the not-for-profit company as part of an entrepreneurship class at St. Thomas University in Minnesota.  They have grown that class project into a full-fledged 501(c)(3) non-profit, and each purchase of a made in the USA hat provides a hat for a child with cancer.  Cancer aside, I love their branding and the way they produce their hats– they are knitted in Oregon and the patches are sewn on, many by volunteers, in Minnesota.

But back to the cancer thing. I always had long, thick hair. I could never have imagined how much colder it is to have no hair! (Though it came in handy when I was having hot flashes…) And while everyone will tell you that you should buy whatever you want right after a cancer diagnosis because “you deserve it,” the reality is that even with good insurance, cancer is expensive. And seriously, who wants to spend lots of money on a bunch of hats just because they have to? I don’t know about other people, but I’d much rather spend my shopping time and money picking out a new lipstick or a pair of boots.

I was fortunate enough to have friends and family send me all kinds of lovely hats. There was the cancer friend who let me borrow some of her ugly chemo caps– the jersey knit hats that weren’t too pretty but were great for sleeping. A sweet friend dropped off the warmest North Face hat that has a lovely soft lining– perfect on a sensitive melon, and warm enough for all the time spent at the bus stop.  Another friend sent two stocking caps from our Alma Mater, and a St. Louis Cardinals hat, too. And then there was the Rastafarian hat complete with dreadlocks that my brother sent…

So the idea of gifting a cancer patient with a warm hat finds a soft spot in my heart. Together with the cozy look of the hats and the lovely branding, I was immediately drawn to the company.  Apparently, lots of other Today Show viewers were, too, and so their website has struggled to keep up and their inventory is shrinking. (So head on over, but be patient!) I’m really hoping that we have experienced this never-ending winter’s last gasp. But I’m still considering heading to Love Your Melon to stock up for myself and the kiddos for next year.  So many companies bill their products as “helping” raise money for a cause, but this company’s dedication to warming the heads– and hearts– of little kids with cancer while still making what looks to be a quality product strikes the perfect balance.

 

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Lessons Learned | Running Through Chemo and Beyond

love where i live

Such a lovely view from last week’s impromptu run with a friend.

To be clear, I was never a runner. At least not until a few years ago.  Diagnosed at 3 years old with exercise-induced asthma, my allergist told me that if something I was doing made it hard for me to breathe, I should stop. Empowered with his stern instruction (and his handy note!) I always got out of the one mile Presidential Physical Fitness run and anything else that required me to traverse the high school track.

The decision to become a runner was more about convenience. It was a way for me to exercise that took the least amount of time away from my family. I could sneak out for a quick run and be back before Clay was out of the shower during the week, or before anyone was even awake on the weekends.  Being a not seasoned (read: slow) runner and needing to get out and back quickly, I was always a solo runner.  Just me and my iPod.

While I have a friend who swears she couldn’t possibly run without her running buddies, I never thought I’d be a social runner. But last year as Sally was training for a half marathon (the one I was supposed to run with her), she would faithfully ask me to run with her at least once a week.  We enjoyed the time together, lots of good chatting was done as we covered the miles around Old Town.  I’m sure she enjoyed the company. But there was the unspoken– we both knew that while I was on chemo, I needed the run. My body needed to stay active.  My solo runs had dwindled to almost non-existent, and I needed those weekly invitations to get me out the door. Lately, finding a day when both she and I are free, have healthy kids, and aren’t snowed in has been tough. I’ve started running with a neighborhood friend, too, which is great as we can meet up while the kids are still (supposedly) sleeping. But I was a little worried this weekend when I headed out for my first significant solo run in a while, resurrecting my favorite Sunday run.  I struggled.  To put it mildly.  I stopped every mile to stretch my very tight legs.  I finished, but I felt defeated physically and emotionally.  I wrote my new running pal, lamenting my struggles.   “I thought I’d be faster without the chatting.  I guess chatting is good for the soul.  And the legs.”

Today’s schedule had a longer solo run waiting for me. If I could have come up with an excuse, I would have embraced it for all I was worth.  I had to force myself out the door.  And would you believe it?  That first mile flew by. I wasn’t tight, I wasn’t slow (for me), and I wasn’t dying to stop and walk home.  It was the longest run I’d been on in ages, and it was so fun to be back on the trails, reminiscing about when I used to run that loop all the time. Friends I’d run into at certain points. I finished strong, relieved that I could run strong on my own. But all those chemo runs with Sally encouraged me to say yes to the intimidating invitation to run with another friend. And the miles spent chatting have taught me something important.  I may or may not be faster when I run with a friend.  But friends are good for the soul.  And the legs.

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